Families gather to remember children lost to congenital heart disease

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WEBSTER GROVES, MO - St. Louis Children’s and Washington University Heart Center honored local families with an annual remembrance event.  Families who lost children to congenital heart disease gathered at that Olive + Oaks Restaurant in Webster Groves Sunday.

One of the couples who helped lead the event has formed a group called Eden’s Army.  Eden Elizabeth died weeks after birth.  The group lends support to families going through similar situations.  Adrianne and Jared Neville also launched the Beads of Courage Program at the Heart Center.

The couple gave parents a string of beads with each bead representing a procedure, a milestone or a moment in each child’s journey.

“It’s a reminder that they’re story doesn’t have to end because their child passed away,” said Jared Neville.

One of the mothers who received the beads said they will forever carry special meaning.  Terran Brown’s daughter Nicole passed away after 4 months in the hospital.

“Each bead signifies something she went through, so it’s something tangible that I can look at, that I can hold and touch and still have a part my daughter with us,” she said.

Doctors and families say much more research is needed to help unlock the mystery behind children born with heart problems.

“Improving that will actually help significantly to improve the survival of those children,” said Dr. Avihu Gazit, St. Louis Children’s Hospital.

Allison Faron is a staff nurse who attended Sunday’s remembrance event.  She found it inspiring to see families drawing strength from each other as they remembered their children.

Faron said, “It’s amazing to have their stories be told and share their story with everyone and honor them for how courageous they are.”